Tunnel Picc Line Placed & Fevers Trending Down!

For the past 24 hours, Bethany’s temp has remained under 100!  Yeah!  Thank you for your prayers!

Today at 11:45 a.m., Bethany received her tunnel picc line.  She has slept most of the day since, and continues to be in a lot of pain from her drainage tubes and now the picc line.  I can’t imagine what she is having to deal with.  About the time she feels the least bit better, we have to do something else to her.

If her fevers continue to trend downward, we will possibly cap her drainage tubes in the next 24-48 hours.  Then she will need to be fever free for another 48-72 hours before we can be released.

Bethany continues to feel all around crummy.  Her head, back, neck, side, and now shoulder (picc line) all hurt.  Not to mention that she has at best only eaten a morsel each day because of nausea.

Please pray for these things:

1.  Pray Bethany will regain her appetite and that her nausea will go away.
2.  Pray Bethany will regain her strength.  Bethany has not been able to walk because she has had an iv line in her foot since Sunday.  This along with not eating has made her somewhat weak.
3.  Continue to pray away her fever.  Praises that the fever is finally coming down!
4.  Pray that Bethany can begin to better manage her pain from her drainage tubes.  Her doctors have said that these tubes could cause significant pain for up to four weeks after placement.  Bethany is currently only getting some pain relief from heavy medication.
5.  Pray that once we return home this time that Bethany will not have anymore complications from these drainage tubes.

Thank you, prayer warriors!  Your faithful prayers for Bethany are being heard.  Praises to God!

SDG,
Taylor, Angela, Bethany, and Jonathan

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Tapping Out: Thoughts on Pain, Suffering, and God’s Blessing

Wrestling has an intriguing rule (real wrestling, not the scripted stuff on TV…that’s called wrastling).  In wrestling, when you or your opponent is pinned and cannot move, you can “tap out.”  Tapping out means “I give up, you’ve got me.”  It’s a way to surrender a point to your opponent.  Once you tap out, your opponent must let you go, and then the dance begins again.

Our bodies also have a tap out function.  God created our bodies to shutdown if we experience intense physical pain.  This is called a vasovagal response in medical terms.  Basically, a combination of two of three things are happening during a fainting spell:

  1. A stimulus directly or indirectly triggers the nucleus tractus solitarii of the brainstem which in turn causes simultaneous enhancement of parasympathetic nervous system tone and withdrawal of sympathetic nervous system tone.
  2. This results in a cardioinhibitory or a vasodepressor  response.
    • In a cardioinhibitory response, the heart rate drops significantly causing a person to lose consciousness.  It is believed this occurs because of the enhancement of the parasympathetic nervous system tone.
    • In the vasodepressor response, the blood pressure drops rapidly (possibly as low as 80/20) without a change in heart rate resulting in unconsciousness.  The withdrawal of the sypathetic nervous system tone is believed to cause vasodilation resulting in the rapid decrease in blood pressure.

Aren’t our bodies are amazing!  A fainting spell seems simple, but look and marvel at the level of complexity which goes into something we see as simple.  Life isn’t much different.  Stress, pain, and suffering come our way and we are able to handle it for a time, but eventually, our burden becomes too much.  We start to shutdown.  We can’t go further, and then we tap out.

Maybe we don’t see it as tapping out.  Maybe, we call it by another name like “relieving stress” or “letting off steam,” but essentially, we all have a release valve that acts like a reset button.   This is not necessarily a bad thing.  We can’t go on and on in suffering without rest.  The question is how do we manage pain, stress, and suffering in a biblical way?  How do we honor God even when everything within us tells us to stop and shutdown?

Our mental, emotional, and spiritual instincts are similar to our physiological systems.  When a direct or indirect stimulus overwhelms us beyond our ability to manage it, we will respond in one of three ways.  We will either shutdown completely by shutting out friends, family, and co-workers, find a way to let off steam in an attempt to access and release endorphins to feel better, or turn to God in faith, trusting Him to manage our suffering and pain.

All three of these responses are healthy and legitimate on some level.  Any of these taken to an extreme will be harmful.  Shutting down and shutting out might just be what we need in the moment, but it cannot be a long-term solution.  We can’t just stop, and not go on.  Nor can we continue long without the company of others.  We have been created for community.

Releasing steam or attempting to forget about your problems via distraction, entertainment, or indulgence can be a good way to move beyond being stuck in the moment.  But again, this means of coping can be taken too far.   We could become so distracted and self-involved that we moved right past therapeutic peace and right into sinful solace.  Instead of a time of healing, we enter into a time of narcissistic convalescence where we depend solely upon our own means to cure our deepest needs.

Finding comfort and peace in God’s presence is Biblical, and in fact, is often the last place many of us turn.  But alas, most turn to God with the wrong motives and ideas of who God is.  We think of Him as the “Genie in the lamp,” Santa Claus, or a kindly old grandfather.  We come to Him to get from Him, but not to get Him.  And there in lies the problem.  We don’t want Him.  We want what He can do for us.

This is true of these other coping mechanisms as well.  We turn to them out of selfish desires and need, and we allow ourselves to abuse them past their intended purpose which was to get us past a moment and onto the next stage of our life and development.  The sad reality is that for many of us we tap out too soon.  We give into the temptation to remain stuck in isolation, in distraction and indulgence, and in a relationship with God for what He can do for us and not to know Him.

Consider the woman at the well in John’s Gospel.  Jesus asks her to draw some water from the well for him.  The woman responds to Jesus’ request in astonishment, “How is it that you, a Jew, ask for a drink from me, a woman of Samaria?

Jesus tells her how it is possible.  “If you knew the gift of God, and who it is that is saying to you, ‘Give me a drink,’ you would have asked him, and he would have given you living water.”  Jesus clearly tells her that He can offer her true drink for her soul, but she is blind to who He is and to the depth of her own needs.

The Samaritan woman only sees a man, and a Jewish man at that.  She did not need anything He could offer her.  We vividly see this in what she says next.  “Sir, you have nothing to draw water with, and the well is deep.”  This Samaritan woman in one sentence summarizes what we think too.  “You have nothing to draw water with, and the well is deep.

The idea of God is grand and lofty, but the reality of God is another thing.  When it comes down to hard living, we want something more than pie in the sky promises.  We hear God with His living water, and we too say, “You have nothing to draw with, and the well is deep!

God is good for dreams and fairy tales, but what about real life?  Do we believe He is big enough, strong enough, and capable to handle our real needs.  Is He truly able to give us living water?  Or, will we just settle for the dirty well water that we are able to draw up for ourselves?

God desires to use our pain and suffering to pour rivers of living water through us, but we can’t tap out at the first signs of discomfort.  We must be like Jacob who wrestled with God and was blessed.  Read the account below.

Genesis 31:24-28

24 And Jacob was left alone. And a man wrestled with him until the breaking of the day. 25 When the man saw that he did not prevail against Jacob, he touched his hip socket, and Jacob’s hip was put out of joint as he wrestled with him. 26 Then he said, “Let me go, for the day has broken.” But Jacob said, “I will not let you go unless you bless me.” 27 And he said to him, “What is your name?” And he said, “Jacob.” 28 Then he said, “Your name shall no longer be called Jacob, but Israel,[f] for you have striven with God and with men, and have prevailed.”

Notice a few key elements of Jacobs encounter with God:

  1. Jacob was left alone.  Pain and suffering often causes isolation.  There is a purpose in aloneness.  God desires to sanctify us.  Sanctify simply means to set apart.  God often will set us apart so in the silence of aloneness we can hear His voice.
  2. Jacob wrestles with an unknown assailant.  We have no evidence that Jacob knew who he was fighting, but he fought relentlessly all the same.  He would not give up.  In our fight against pain and suffering, we often don’t understand why we are having to endure these difficult circumstances.  We don’t know who is assailing us, but we must not tap out.  We must fight on and not give up.
  3. Jacob’s assailant deeply wounds him.  For the rest of Jacob’s life, he will walk with a limp, a daily reminder of his struggle from that night.  This point is crucial for two reasons.  First, Jacob continued to endure even once he was  wounded.  He did not give up.  In fact, it would appear that he fought all the more.  Secondly, just because Jacob did endure in his match, it did not mean that his wound would only be temporary.  Jacob suffered the remainder of his life from this conflict.  We cannot expect to walk through suffering with the idea of enduring it and coming out unscathed.  Maybe we will, but most likely we’ll come out scarred and possibly a limp.
  4. Only once Jacob had endured through the night did he discover he was wrestling with God.  Don’t blame satan.  Understand and know with comforting confidence that God is in your mist.  He is in control, and you are wrestling with Him.  Endure until the morning, and don’t tap out!

Read what God spoke to Joshua before he led the Israelites across the Jordan after the death of Moses.

Joshua 1:5-9

5 …I will not leave you or forsake you. 6 Be strong and courageous, for you shall cause this people to inherit the land that I swore to their fathers to give them. 7 Only be strong and very courageous, being careful to do according to all the law that Moses my servant commanded you. Do not turn from it to the right hand or to the left, that you may have good success[a] wherever you go. 8 This Book of the Law shall not depart from your mouth, but you shall meditate on it day and night, so that you may be careful to do according to all that is written in it. For then you will make your way prosperous, and then you will have good success. 9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.  The question is not, “Is God with you?”  The question is, “Does your God have something to draw with, or is the well too deep?”  And, are you willing to wrestle with God, or will you just “tap out?”

God’s comfort and peace be with you!
Taylor

Wait & See…

Nothing really new to report this morning.  Bethany continues to run fevers between 101.5-103.  She continues to have a lot of pain from the tube placements, and her doctors believe the fevers are most likely associated with the tubes, infected bile, and overall her system just being irritated because we keep messing with her.

The plan for today is rest, manage pain, and hopefully see her fevers go away. The Infectious Disease team is also planning to come by to consult on Bethany’s case and give treatment recommendations to the transplant team.

Finally, we are still discussing what to do in regard to Bethany’s iv lines.  She currently has two lines.  One is in her foot, and the other is in her wrist.  They are both working, but Bethany has a history of blowing lines quickly.  The transplant team is pushing for another pic, specifically, a “tunnel pic.”  A tunnel pic is anchored in the neck.  I’m not happy about this option.  I am pushing for a port to be placed because the maintenance for the port is much easier.  The transplant team has legitimate reasons for not wanting a port, but we believe a port will be a better option for Bethany going forward.

How to pray:

1.  Pray Bethany’s fever will leave.
2.  Pray Bethany will feel better.  Currently, her back, neck, side, stomach, and head all hurt.  She is not eating much because of nausea, and she isn’t sleep much either.
3.  Pray for wisdom in regards to a pic vs. the port.
4.  Pray that the biliary tubes will do their job and scar her bile ducts open allowing Bethany’s liver to function properly.  This ultimately is still a temporary fix.  If the tubes don’t work, Bethany will then need to be re-listed for transplant.

Thank you again for everyone’s prayers and concern.  Have a great day!
Taylor, Angela, Bethany, and Jonathan

Atlanta Update – 2-23-15

Bethany continues to run fevers of 102+.  Today she went back into surgery, and they placed larger tubes in her liver.  They also looked to see if there were any more obstructions.  As best as we can tell, she has no other obstructions.  We still do not know the cause of her fevers.  We will be staying put here in Atlanta until we can get Bethany’s fevers under control for at least 48-72 hours.

How to Pray:

1.  Pray for Bethany’s fevers to leave.
2.  Bethany continues to have a lot of pain associated with the placement of her drainage tubes.  Please pray the pain will subside.
3.  Pray for rest.  Hospitals are the worst place for sleeping.
4.  Pray for Jonathan and Angela back in Birmingham.

Thank you!
Taylor, Angela, Bethany, and Jonathan

Being Transported Back to Atlanta…

We have been unable to get Bethany’s fever under control even while on two antibiotics. Her doctors want her in their care, and they will possibly want to take her back into surgery to check her drain tube to see if it’s the cause of the fever.

Angela plans to travel over with  Bethany today. I’ll take Jonathan to school in the morning, check in with Bethany’s school counselor, and then drive back to Atlanta to relieve Angela.

How to pray:

1. Pray we can discover the cause of this fever and get it under control.

2. Pray that Bethany has not become resistant to these antibiotics. She has had to be on constant antibiotics for the past two years. This is a real concern.

3. Pray for Angela’s mom Jeanie. She broke her ankle and wrist last Saturday night while at our home. She required surgery on her wrist. She is home recovering, but please keep her recovery in your prayers.

4. Pray Bethany’s doctors will agree to place a pic line or port in Bethany. Bethany’s veins are giving out. She’s gone through 6 iv  lines in eight days. The last two lines it has take many sticks and several hours for them to even find a place to place a new line.

5. Pray for Bethany’s spirit. She feels awful. She hurts in her side, head, back, neck, and all over. She’s ready to feel better and seems a little discouraged.

6. Pray for safety for our entire family as we travel back and forth to Atlanta. Pray for Angela as she follows the ambulance today. Pray for her return trip tomorrow. Pray for me as well. Last night as Jonathan and I drove to the hospital we were rear ended. We’re okay, and it appears only minor damage to our bumper occurred, but it just reminded me that we need prayers for traveling safety as well.

God is good, and we expect to see Him do big things. Thank you for your faithful prayers and concern. Please feel free to pass our update along to others in your prayer network.

Thank you!

SDG,
Taylor, Angela, Bethany, and Jonathan

Admitted to Children’s Hospital Birmingham…

Bethany has now been admitted to the hospital.  She is room 931.  Her fever came down with around of Tylenol and antibiotics.  Her transplant team in Atlanta wants her to remain in the hospital for seven days for iv antibiotics and observation.

Please pray for:

  1. A quick recovery.
  2. No complications with the GI and transplant team here.  I still have reservations about being here because of our past experience with the team here.  I’ve made my concerns known with the team in Atlanta, and they have assured me that they will be fully involved in managing Bethany’s care.
  3. Normality in the mist of changing plans and schedules.
  4. Pray for two families we know here in Birmingham.  Both lost sons this week.  One lost a son to cancer (age 5).  The other lost a son to complications with medicine and a heart murmur (age 15).

Thank you for your continued prayers for Bethany and our family as we continue down this road.  Your prayers and support keep us going.

SDG,
Taylor, Angela, Bethany, and Jonathan